Polymyalgia Rheumatica (PMR): Meet others & Share Your Story

At this point I'm desperate enough to try prednisone. But rheumatologists in my region won't see patients without referrals, and I can't get an appointment with an internist or other generalist until next summer. Should I try to get a prescription online, or just order the drug from outside the country? PushHealth supposedly provides a free medical review before filling a request; PlushCare provides 15-minute online doctor visits for a monthly or annual fee. Has anyone tried one of these services or something like them?

you may be able to get a emergency room or walk in clinic to get you a short term solution for medrol. I ended up at one in march of 2020 and was given a prescription for a blister pac dose with i think 18 or 19 in it at 4mgs each. gives you a two week window to fing an open rumi

Welcome @warriorsue333, I know it has to be difficult for you to watch your mother in pain and not being able to find help for her. My PMR is currently in remission but I can't imagine dealing with the pain without having prednisone to treat it. You mentioned she is now on Plaquenil and it's not helping. Here's some information on the topic that you may want to discuss with your mother's doctor/rheumatologist.

"Disease-Modifying Antirheumatic Drugs
Due to significant morbidity associated with prolonged exposure to GCs, adjunct immunosuppressive medications have been evaluated to assess their GC-sparing effects in PMR. While disease-modifying antirheumatic drugs (DMARDS) have been successful in the treatment of other inflammatory conditions, insufficient evidence is available to suggest that hydroxychloroquine (Plaquenil, others), azathioprine (Azasan, Imuran, others), or leflunomide (Arava, others) are beneficial in the treatment of PMR. Methotrexate (Otrexup, Rasuvo, others, 7.5-10 mg/week) has been evaluated in 3 prospective randomized studies with variable results regarding steroid-sparing effect and reduction in disease relapse risk.16-18 In clinical practice, methotrexate is not initiated routinely at disease onset but can be considered in patients at high risk for developing GC-associated adverse events, or in patients experiencing 2 or more relapses." --- Latest Advances in the Diagnosis and Treatment of Polymyalgia Rheumatica - New guidelines shed light on treatment for this common, autoimmune rheumatic disease: https://www.practicalpainmanagement.com/pain/myofascial/inflammatory-arthritis/latest-advances-diagnosis-treatment-polymyalgia-rheumatica

The above article is somewhat technical but there was an editors note at the bottom of the article with a link that may be easy to read --- Editor’s Note: The authors’ have also written an overview of diagnosis and treatment of polymyalgia rheumatic for your patients: Polymyalgia Rheumatica Overview -- With proper treatment, symptoms of PMR generally improve within one to two days. But relapse is common, so patients may have to stay on therapy for up to 2 years, and sometimes longer: https://www.practicalpainmanagement.com/patient/conditions/rheumatoid-arthritis/polymyalgia-rheumatica-overview

Are you able to talk to her doctor about the negative effects of the prednisone on your mother's health vs how to alleviate her pain?

Thanks for the information John. I especially appreciate the information on methotrexate as my rheumatologist is asking me to consider that. I am disturbed though by the statement in the Editor's Note: "...so patients may have to stay on therapy for up to 2 years, and sometimes longer..." Since according to the latest studies, PMR lasts an average of 5.9 years, the 2 years statement just adds to the echo chamber that many encounter when diagnosed.

Hello group. I was diagnosed with PMR in June and started on 10 mg prednisone. Started getting all the signs GCA in August which prompted my primary care doctor to up my dose to 40 mg and referred me to rheumatologist and surgeon to do temporal biopsy which showed negative. Still all the signs temple sensitivity and irritation , hair loss in that area horrible pains going up the back of my head and through my shoulders. Due to those reasons rheumatologist suggested going on at Actemra which I have not been able to start yet. Breathing has become significantly difficult therefore having to go to the hospital with massive blood clots in my lungs. I’m wondering if all of us is related to the prednisone. Has anybody else experienced this?

Thank you so much John. I will definitely speak to her doctor and share all my findings with him. So grateful to have found this forum. Something has to give...

@carol75. Hello, Carol. I've had GCA for 2 1/2 years. I don't believe Prednisone is the cause of the blood clots, pain, etc. It helps with those symptoms. I was on massive doses for 1 1/2 years and finally, in the care of a rheumatologist, I was put on Actemra injections once per week. Actemra is much easier on your body than Prednisone, and was developed specifically for GCA. No moon face or weight gain either! I hope you're able to have your Actemra injections soon. Please feel free to message me for any help or support you might want.
Warmly, Laurie

When considering complementary or alternative treatments, be open-minded yet skeptical. Learn about the potential benefits and risks. Here is an article from Mayo Clinic that might interest you about evaluating claims made by the producers and/or sellers of supplements, natural products and other alternative medicines. http://mayocl.in/2tGC0Jp

When it comes to supplements and complementary medicine, I always refer to NIH's National Center for Complementary and Integrative Medicine to better understand the proven evidence. See this information:

– Colloidal Silver https://nccih.nih.gov/health/silver

The first section of the page states: What’s the Bottom Line?
How much do we know about colloidal silver?
There are no high quality studies on the health effects of taking colloidal silver, but we do have good evidence of its dangers.

What do we know about the effectiveness of colloidal silver?
Claims made about the health benefits of taking colloidal silver aren’t backed up by studies.

What do we know about the safety of colloidal silver?
The U.S. Food and Drug Administration (FDA) has said that colloidal silver isn’t safe or effective for treating any disease or condition.

According to Dr. Brent Bauer from Mayo Clinic says "Colloidal silver isn't considered safe or effective for any of the health claims manufacturers make. Silver has no known purpose in the body. Nor is it an essential mineral, as some sellers of silver products claim."
You can read more in this article:
– Colloidal silver: is it safe? https://www.mayoclinic.org/healthy-lifestyle/consumer-health/expert-answers/colloidal-silver/faq-20058061

Hello! My rheumatologist diagnosed me with PMR in 2/2021. My primary had been keeping me on prednisone for 6 months prior until I could get in to see the specialist. My labs are completely normal. The symptoms I had were characteristic of PMR with the added problem of carpal tunnel in both hands. I am a very active 69 age woman, so once getting moving the morning, I did pretty well, but nights were "nightmarish". I am controlled today with methotrexate and 5.5 of prednisone, unable to taper any lower yet (pain is too bad to sleep). It's great to see the supportive posts of others. I am looking for diet solutions, and the only ones I see that I could improve is no alcohol, since I usually have a glass of wine with dinner.
Anyone else have PMR without the lab confirmation? And any other diet thoughts? Otherwise Merry Christmas and Happy Holidays.
Judy

An anti-inflammatory diet is supposed to help. I regularly have a glass of wine at night and don't notice a difference when I don't. Once you are on prednisone, you're labs will be normal and 15-20% of people have normal labs even before beginning treatment. You were just diagnosed in February...that's a pretty rapid taper. I hope you are reasonably comfortable as you should be before you taper again. If so, you may be one of the fortunate ones who beats the average 5.9 years before remission.